Not long ago, I was with a bunch of people I love. We were celebrating a birthday and it was smiles all-round.
One of the guests, who has been struggling with serious and rather frightening health issues, had just arrived, and mentioned the eternity it seemed to be taking to get the proper medical tests and procedures done here, in Quebec. I couldn’t help but say: “Well I’ve been so lucky at the CHUM and received such good care.”
And my interlocutor answered right back: “Yes, but you’re terminal.”
* * * *
I feel like I should leave a space on the page. It represents a pause. How time seemed to freeze just long enough for me to gasp silently.
Right up until that moment, I was feeling confident and upbeat. In social situations, it isn’t ever possible to make my cancer disappear. Time is required. People have to get used to me and my short white hair (but with blue eyes!), and ask their questions about how things are going in chemo (which I appreciate), and then, the cancer thing is allowed to go sit in a corner and take a break so conversation can move on—until someone calls it out again (sometimes that person is me).
TERMINAL. It was the first time that word has been used around me. And though it was spoken with not a micron of malice, still, it made me wobble, to have it thrown at me like that. It was like being splashed unexpectedly with black paint at super speed. I felt tainted. It reduced me to one of the doomed soldiers of the gaunt chemo army.
This all happened in a split second. I remember thinking, in a shaky inner voice: “But we’re ALL terminal.” (that’s the deal in this one life we have).
I haven’t heard the adjective used at the CHUM, or on my blog page where so many cancer sufferers and sympathizers come to leave comments.
* * * *
I’m a word person. I think it’s the second time in my life that I’ve actually said this in a formal way. The first time was in a yoga weekend workshop, years ago, when we were asked to repeat a mantra over and over and I said to our instructor: “I’m a person of words, and I’d like to know what it is that I’m saying.”; and he answered with a “Pfff! A person of words” and a backhanded swipe at the air, meaning the sounds, the vibrations of Sanskrit are what matters, and understanding wasn’t necessary. That may be the day he lost me. Right at the beginning.
Language is my passion, my fascination, my friend. So, it isn’t a surprise that writing this blog has been such a hopeful, buoyant experience.
Language has its own alchemy. It transforms words into love, understanding, fear, wisdom, confusion, suffering, compassion, anger, motivation…and hope. During my journey with cancer, it has been a universal elixir, allowing me to connect with people all over the world.
The oncologists and other members of the medical team (radiologists, chemo nurses, pivot nurses, pharmacists, psychologists…) with whom I’ve established such crucial relationships since last summer, have perfected the language of their trade, and the very best never falter.
Even the staging of my cancer was done with care and circumspection. Once “Stage 4” was determined, it was almost never used again in my presence. When I sit in front of one of the research team’s oncologists, every second Monday morning, the calendar is discussed—my chemo dates and upcoming blood tests and scans—but I don’t know that we’ve ever talked about finalities.
There’s a softness with language there. Those who work in oncology have learned to speak that way. They don’t say exactly when my chemo will end (there’s a certain, immutable number of cycles I must go through in this clinical trial, but some have been interrupted because of side effects and so I’ve lost track), but they carefully walk me through each one. They won’t say what treatment(s) will follow chemotherapy because they know to wait and see what will be required then…
When you focus on NOW, you don’t need words like terminal and stage 4…but you do find yourself using the word chronic.
My hope is that when my chemo is done (which I think will bring me to next fall), I will have reached a terminal of a different kind, where I will hop the next treatment train that will, I hope, allow me to travel a good distance more. I don’t know how long my trip will be, and don’t expect my medical team to even attempt a guess.
This is, in fact, how most of us live every single day, travelling as best we can, though cancer patients may be the most grateful of all the passengers.
Though it feels like I have to just hang in there through chemo, the fact is that I can’t and shouldn’t exist in some kind of holding pattern. I have to go and live as fully as I can.
This may be a peak. How I feel right now could be the best I’ll ever feel again…
I can’t say—I don’t know.
What I know is that there’s the possibility of so much more pain; of pain so pervasive that life narrows, and you enter a tunnel and for a while, it’s as though that tunnel has no end.
Someone I know, care about and identify with effortlessly, is suffering in this way right now. Or she was all day and night yesterday, when I could think of nothing else. I won’t name her. Her torment is as real as it is private.
The cause of her suffering is the cancer that has invaded her bones. Yesterday, she reached the point where her morphine no longer made a difference. I wasn’t with her, but I know that she is tough, and willful, and that her agony had to have been…unspeakable.
Knowing that someone is suffering the way she was, and has been for days, turned me inside out. Lying in my bed last night, I felt connected to her through invisible fibres that functioned like nerve endings.
Those who love her are all tethered to her pain, and every thought/prayer sent toward her also pulls on that part of the tether that is connected to us.
It reminds me: do not take a second of wellbeing for granted.
There is suffering everywhere—cancer, disease, are not its only claim—but this pain has a face, an identity known to me and everyone close to her; and that’s why it’s so easily sensed by all of us.
What can I do? What should any of us do?
Be mindful of that suffering. Don’t dare push it away when that connection is painful. Share it in spirit. Be present to it. Ache for the one suffering. Bear witness to it. Send love, send grace…
And then yell and howl publicly in proxy pain, till the palliative medical team gets it right. Till the loved one’s nerve endings quiet.
There IS a cessation to suffering. At the end of that tunnel is light and deliverance.
It’s a cold Sunday morning and I’m sitting in what’s become “my spot”, that is, at the dining room table that looks out onto the back yard. It’s beside the sliding door, and I favour it because regularly enough, it’s here that a warm beam of sunlight enters the house, and for an hour or more, I have not only the light, but its rays upon me.
I’m able to spend lengthy stretches of time here. When Simon and Christian are off at work, it becomes a quiet, open space. There’s just me and my laptop, which, given the circumstances of my life, is the door that I can throw wide open to the world—despite the side effects of chemo I’m dealing with on any given day—and enter it, travelling as far as I wish, messaging, writing to or chatting in real time with the people I know and love, but also, thrillingly, with those I have met through my sickness and my blog, leaving my body behind. What would my view of life be like without this aperture?
(Oh! I’ve just been interrupted by the song of blue jays up in the pine trees in our yard and I even spotted one. It’s the first bird cries I’ve heard in months. They’re not the sweetest species, but on this cold winter afternoon, their vitality’s welcome!)
As the weeks and months have passed, I’ve never been more aware of the importance of this screened device that I type on and use relentlessly to connect with what otherwise lies outside my reach. Winter has also placed walls between me and the world as surely as my cancer treatment has.
Twenty years ago, I would have been dependent on the telephone, that very narrow channel of communication. I could have exchanged in real time, certainly (though I would doubtlessly have left innumerable messages—it was the heyday of answering machines), but along such a thin line of human contact. Banter mostly. Voices filled with attempted cheerfulness, worry, love, concern and the mundane news of everyday life that would have been my interlocutors’. But never seeing the faces that might have betrayed much more—a richness of pain and love.
On my laptop, I give and receive as lightly, as impulsively, as much as I choose or as much as I’m invited to offer. Internet is my means of travelling, and this year especially, it has taken me beyond what I thought possible. I think it’s saving me from the despair and depression that I might have fallen into.
Writing, especially, has come to my rescue. While I’m caught up in it, there is always an exchange happening between my thoughts, and you. Without you, writing would quickly lose its meaning. I’m sure of it. I’m not a diarist. I write pages that may or may not be read by you but are nevertheless meant for you…whoever you are. You were and always will be the people I know and love, and also someone I know less well but would like to know better. But I’ve also come to realize that you may be someone I just met on one of the myriad, tiny bridges of words built on my blog. I barely know you, and yet you have left behind words of appreciation and mostly, a piece of yourself.
Wednesday, February 6th, 2019
Like so many chemo patients, I’m afflicted with shivers. They come and go in waves with a constancy that assures that they’re always a factor in my daily life.
It isn’t a coincidence that the sunny corner where I sit and write is directly in front of an electric heating panel. This is one way I’ve found to postpone the inevitable—at least from fall to spring. It’s as though any degree of cold in the ambient air finds me. It works its way into my feet despite the fact that I wear huge, thick socks bought at Chapters (the fuzzy knee-high ones) and l’Équipeur (the thermal ones).
This morning, I’m still in my soft pajamas and super-socks but, sensing this wouldn’t be enough, I’m also wearing a large, loose Carraigdonn 100% merino wool sweater, made in Ireland (I checked the label), that’s my mum’s. A previous chemo patient herself, she came to my rescue with it last fall, knowing it would be needed. I thank the sheep who contributed their miracle, all-weather wool to it. It’s like putting on a heated woollen tent (merci Maman xo).
Shivering reminds me that my body is under siege and that it’s having to expend energy fighting on many fronts at the same time, the chemo killing parts of me while all of my body’s systems kick in to repair, restore and remove the wreckage. It reminds me of my frailty and vulnerability; how quickly my battery loses its charge. It makes me feel old and compromised.
My shivering is a visible sign that my sons pick up quick as lightening, filling the den with blankets and covering me up while we watch Netflix together. Simon also mastered the use of the slow-combustion Napoleon stove that’s in the den (which is still allowed in Hudson), where with a wood fire only, he has succeeded several times in raising the room temperature to a thermonuclear 30 degrees Celsius. The irony is that once I’m under those blankets and all heated up, it’s almost impossible for me to get up and go to bed…such is the shock of re-entering other, cooler parts of the house.
But the shivers and my circumscribed life with chemo have allowed me to luxuriate in the most delicious and self-indulgent ritual: the late morning bath. You see, showering is rough. No matter how hot I set the water, or how warm the bathroom is when I enter it, I can barely bring myself to pull open the shower curtain and step out to face the wall of cooler air that greets me once I’m done.
But a bath…Ahhh…I fill it right to the overflow opening, lie down in the hot water and marinate till every calorie of available heat has migrated into my body. This ritual came about as a result of the 5FU infuser that I wear from Wednesday chemo to Friday afternoon. Bathing was one way that I managed to wash without getting the infuser or the port-a-cath in my upper chest wet. The fact that I was as warm as a foetus while bathing was a sweet discovery. Until now, I don’t think I had ever taken a late morning bath. Lying there, I’m reminded how alien my life has become; and then I try to savour every sensual moment of the experience. I’m sick. I’m in treatment. My present life is almost unrecognizable to me. And yet, to be in the very warm water—in a quiet, safe and peaceful space where I can close my eyes and simply breathe, or else let my mind wander and start writing things in my head, or face my own, private fears and truths—is a very fortunate oasis, but also an indication of my life’s contraction.
When we first moved into this new house in Hudson, we—Simon, Christian and I—brought roughly a hundred “smallish” boxes of books, which we stored in the basement while we settled in. But the idea, The Plan, was always that we would turn the living room into a library—a dedicated reading room—and merge our collections.
It meant building ten or more floor to ceiling IKEA bookcases (Simon’s doing, with his friend Isabelle), and then systematically emptying every box, sorting through their contents and placing the books in some kind of order (we settled for detective and mystery in one corner and everything else—fiction and non-fiction—together, alphabetically, by author, along the main wall). Just days before Christmas, the shelves of our reading room were finally almost fully garnished.
It’s a beautiful room, and our favourite. It’s the room that we all imagined when we spoke of moving. With very few exceptions—one being all family photos and paintings, but especially photos of my grandchildren—books are our most beloved possessions. I’m not exaggerating when I say that books, in ways too numerous to count, have made us, and provided us with a third common language.
Since my “liberation” from normal life and work, I’ve caught up considerably in the reading department, mixing novels and non-fiction. Reading’s been a great consolation—or should I say compensation? But the shadow of chemo has reached this part of my life as well, as once again, good ol’ 5FU, the chemo drug that seems to have it in for me, is affecting my vision by drowning my eyes with defective tears, then drying them out and irritating my corneas, to the point where the headlights of cars at night appear to be coming at me like quasars, and even in daylight, everything I try to read (including this laptop screen) is blurry. And despite the assortment of drops I use, my vision seems to be getting worse.
I won’t give up reading, even if I have to use a magnifying glass. Books are other worlds, other people, other voices, other’s dreams, other’s stories. Book are truth. Books are a shelter and an escape from our own pain, even if only by leading us into the suffering of others. Books are joy, and lightheartedness. They are wisdom. They are the repositories of billions of word bridges to each other.
Having time to read during my life in treatment gives me solace. I won’t give up books.
Not too long ago, as I was thinking of this piece and admiring the lovely library right here, next to where I write, I realized that there are still so many books on the white shelves that I haven’t read. Some come from Simon and Christian, but many are books I bought myself, after seeing a great review or wanting to read more of a writer I’ve just discovered and loved. So, I acquired them, and they are my trove. Our trove. I’m not sure how many they number in total, but there must certainly be fifty or more of them…perhaps as many as a hundred or more…
The question that struck me and that has haunted me since is: will I have time to read them all? Amongst all of the books at the library and those being published every day, those we have here represent such a small proportion. But it’s possible that I will leave many of them unread. Counting down my days in this way is dark, I know, and yet…and yet there’s also something immensely comforting and even subversive about measuring my lifespan by “books read”. As though I needed the motivation. [insert my smiling face here]